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May choose not to do chemo.

AppraiserGirl
Posts: 20
Joined: Jul 2009

My brother was diagnosed in June 2009, with Stage IV squamous cell carcinoma at the base of the tongue with lymph node involvement. Radiation oncologist recommended seeing a medical oncologist re: chemo, but my brother is reluctant. I've heard the combination of chemo and radiation is the best way to go. Any suggestions about how to get brother to reconsider and at least go to see what the medical oncologist has to say?

I just joined this site and have been encouraged with all the experiences and remedies offered by everyone. I was pretty discouraged, but now have hope.

Thanks to all.

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

Sorry to hear that about your brother.

I am a 9+ year survivor of stage 4 tongue cancer. Mine didn't have any node involvement but because the tumor was so large it was classified as Stage 4.

I was reluctant to have chemo also but when I heard the odds I wasn't happy of just doing radiation then surgery. I was given a 45% chance of surviving if I just did the radiation versus 85% chance if I added the chemo.

My regiment was 5 days a week radiation for 10 weeks with 4 days off for holidays with simultaneous weekly chemo. I had 10 chemos normally every Wednesday but when blood counts were too low, I had to skip 3 weeks once and 4 weeks once to let my body recover enough to take the chemo.

I was never sick from the chemo, some are as everyone is different.

Then was surgery which was to remove 85-90% of my tongue. But when they did the deep tissue biopsies in the surgery all they found was scar tissue and dead cancer cells.

While I can't speak for everyone but I wanted to do what ever I could to become cancer free. May 1st was my 9th Anniversary of being NED, no evidence of disease. I still go to the doctors twice a year for follow ups and will continue to do so until they determine I can start a once a year follow up.

Good luck to you and your family through this difficult time.

AppraiserGirl
Posts: 20
Joined: Jul 2009

Thanks Sash. I've read some of your postings and am so glad that you beat it. Yours is a real success story! We are just beginning and I want my brother to be like you and do everything he can, but for some reason he wants to do only radiation. He seems to have kind of a defeatist attitude right now and is really worried about what side effects he might have (emphasis on the "might").

My sister and I keep trying to tell him that he doesn't know what will happen yet. Maybe his treatment won't affect him like it does others. He will have 25 radiation treatments and so far has only completed two. He has not even been to the medical oncologist to see how many chemo treatments he will need. I so hope he will change his mind and go.

Thanks again for the response and the kind words. I'll let you know if my brother goes to the medical oncologist.

BeenThereDoneThat
Posts: 29
Joined: Jul 2009

I too was torn on whether to add chemo to my radiation treatments when I had a radical neck for squamous cell cancer for lymph nodes in my neck. This was in 2004, and the 'standard' was just radiation, no chemo.

My doc told me at least to go see the hemoncologist about chemo. I too was afraid of all the side effects. I told them that my biggest worry was if the chemo would keep me from the radiation treatments. He was straightforward and told me that it would not.

I chose to go with both radiation and chemo. My decision really came down to what I would think if I didn't to chemo and heaven forbid it came back. I would then be a 'what if' person, and would always wonder if I did everything I could to get rid of the nasty cancer.

I did not have a bad time with chemo. No nausea, didn't lose my hair, and just had a few tired days. Also, when I was feeling sorry for myself I say people in there 70's getting chemo and were in great spirits. Again, everyone is different, but today they have so many wonderful things to prevent or minimize the side effects.

I know that your brother will do great. It is his decision, and all should support him no matter what he chooses. You will both be in my thoughts and prayers.

AppraiserGirl
Posts: 20
Joined: Jul 2009

I can't express how much I appreciate all your information and experiences. When I read all your responses I feel encouraged and I hope my brother will join this website so he can be encouraged by everyone too.

Thanks again and you are all in my thoughts!

Good luck to everyone!

Jan Trinks's picture
Jan Trinks
Posts: 446
Joined: Apr 2009

Appraiser Girl:

My husband had Stage 4 with one lymph node invovlement and nothing else. He has one of the top oncologists around and after his pet scan showed only localized cancer and nowhere else (Praise the Lord!)the oncologist said the "recipe" was what they call inductive chemo followed by seven weeks radiation. He was diagnosed in Nov. 2008; started chemo on Dec. 1, Dec. 22, and Jan. 19. He then did seven weeks 5 days/week of imrt radiation therapy. Both the onocologist and the radiation oncologist was positive from the beginning. He had his CT scan on June 5 and it was fabulous as the radiation oncologist put it. He got his port out on July 1 and returned to work on June 8. The chemo was no picnic, but we made it through. And yes, my husband felt lousy (but never got sick) for a few days after the chemo, but he muddled through. From what we have been told; they've had a lot of success with this treatment for this type of cancer. I truly hope your brother reconsiders. We'll be praying for you.

Jan Trinks

pennynl4
Posts: 49
Joined: Jun 2009

My husband was diagnosed with squamous cell carcinoma at the base of this tongue this npast May. It had spread to a lymph node. he had a radical neck dissection on May 20 and started his first chemo on June 24 and his first radidation on July 1.

He is half way done with treatment.....his last being August 18th. He is doing remarkable well, I think. But it will get worse I know. It is hard for him to eat and swallow, but he is eating soft foods and drinking Boost and Ensure. He is using Magic Mouthwash which deadens the pain for a short time.

The chemo he is on is Erbitux which is used quite often in treating this type of cancer. This chemo does not have as many side effects as others and is not as hard on the body as others. He doesn't have the bad nausea and he hasn't and will not lose his hair. He is tired from both the chemo and radiation treatments. If my husband is having any side effects from the Erbitux, he is not aware of it.

Is your brother going to be having neck surgery to remove the lymph node?

Before the radiation starts, it might be a good idea to see a chemo doctor to see what kind of a plan he has for your brother. If they decide to use the Erbitux, he might just breeze through chemo, but he really should at least talk to the doctors because not everyone has the same side effects.

I know this is so overwhelming and I know I was consumed with worry.

Good luck and I hope this helps.

Penny

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Very sorry that your Brother has been forced into our very unique Fraternity/Sorority, but please tell him he can't fool around with HNC. The first rule out here is that you put together a Cancer Fighting Team that you trust(ENT, Rad Oncol, Chemo Oncol, PT, etc.) AND DO WHAT THEY SAY. Think of it this way, they are likely to have encountered everything your Brother has or will encounter only maybe thousands of times. They know what they are up against and hopefully are up to date on the latest developments. Contrarily, if he does not have absolute faith in them he needs to find the right Pros and quickly.

Please impress on your brother that this is in fact a life-threatening disease. I know he already knows that, but he may have only one shot at beating it and I know he wants that shot to be the best there is. You can research on the Internet and find all kinds of information that should help persuade him. But, the bottom line is that chemo plus radiation together are many times more effective than either treatment by itself, and 5 year survival rates are going up all the time.

Also, tell your brother that chemo, while not fun at all, is very doable. With the modern meds they have for time-released anti-nausea for example, I never had more discomfort than an over the counter antacid would take care of. My chemo was once a week, low dose Cisplatin. I did not lose any hair. My worst side-effect was dehydration and sore throat mostly due to radiation of course.

Again, tell Bro he has got to do this the right way and pronto. "It's not nice to fool with Mother Nature".......especially when she rears her head as an ugly deviant disease.

This is a war he can and must win..................Keep us posted.

And, if he has any doubts or questions feel free to email me and I'll help as much as possible.

God Bless...............JK

AppraiserGirl
Posts: 20
Joined: Jul 2009

I'll let my brother know. I'm hoping he will join this website and communicate with all of you.

Question, during treatments (rad and chemo) did you continue to work? I would be interested to know how working comes into play with the treatments. Any info would be appreciated.

Thanks again.

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Fortunately I have an Admin position and my employer was great about letting me telecommute with my laptop from home on those days that I needed to. So, yes, I continued to work but was allowed the opportunity to do so fully reclined in my recliner.

Push yourself as you feel you can. Trust me, your body will tell you when to ease up. But, it is all temporary. It will get better over time.

Hang in there............JK

jtjones56's picture
jtjones56
Posts: 21
Joined: Apr 2008

I too was recommended to do radiation and chemo for the same base of tongue cancer. I, too, didn't want to do the chemo, but I have two children and four grandchildren and my children said to me. If you don't do it for yourself, do it for us. Also my brother who teaches medical school and is also a doctor convinced me that since it had lymph node involvement that I must do the chemo. I did it and I finished my treatments in Dec. 2008 and am cancer-free as of today!!!

AppraiserGirl
Posts: 20
Joined: Jul 2009

JT

Thanks for responding. I'm glad you did the chemo and remain cancer free! I'll keep trying with my brother, but his treatment is ultimately his decision. He is single and has no children, but he has me and my sister who love and care about him and want him to do everything he can to beat it.

Take care of yourself and hug those kids and grandkids!

Godskeep
Posts: 2
Joined: Jul 2009

Hey everyone,
This is my first day on this site and my first post. In December 2008, I was diagnosed with a squamous cell carcinoma at the base of my tonsil that required a radical dissection surgery of the right side of my face and throat.They had to break my jaw in order to swing out the right side to remove the tumor plus soft palate tissue as well as upper muscle from the base of my skull because the cancer had spread. I spent well over two months in the hospital then faced 6 weeks of daily radiation treatments plus the chemo twice a week for four months.
I'm now two and a half months or so after treatment and doing okay for the most part.
I share all this AppraiserGirl because I'd like to encourage your brother to follow all the protocals that the doctors recommend. While in the hospital I spoke to several nurses and others in the health care industry that related their stories to me about early childhood or adulthood battles with cancer where they opted to not have chemo and all said their cancer had returned. I too struggled with this decision while I was in the hospital but after hearing so many people share with me how they wished they had gotten the full treatments as their doctors had recommended I relented. Tell your brother to hang in there, he's not alone and It will slowly get better. Trust in God and His mercy and grace. I want to thank everyone here for there postings and encouragement to others, God Bless You all, AppraiserGirl, I'll be praying for your brother and you. Keep up your own Spirit and attitude for your own sake and your brothers.

BeenThereDoneThat
Posts: 29
Joined: Jul 2009

Welcome Godskeep. Thanks for your post. I'm sure others appreciate your insight. Glad that you are doing OK. Sounds like they really did a number on you...I only had 3 chemo rounds.

Take care and keep us posted. My thoughts and prayers are with you.

George

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

I was stage 4 tonsil cancer with a lymphnode the size of a lemon. I got 6 weeks induction chemo Taxol plus Erbitux and Carboplatin all 3 together once a week for 6 weeks. Then i got 7 weeks of radiation with double sessions on fridays plus chemo Cisplatin which was given to me everyday on weeks 1,4 and 7 of radiation. Then i had a neck dissection to clean everything out. I am about 11 months from the end of radiation and 9 months from operation. I am feeling great the anti nausea meds and steroids made the chemo not so bad and the pain meds got me thru the last weeks of radiation and the month after. I was asking them if they could up the doses of chemo and give me more radiation. I wanted the cancer dead. This is a curable cancer give it your best shot , the last 3 weeks of radiation and the month after sucked. The chemo didnt bother me at all. Get a peg tube and a port and get as much food and water in you as possible.
Im 53 with a 3 year old son and a 23 year old wife . And they cant keep up with me. I remodeled a basement today put in a good 10 hours im exhausted but its a good exhausted. Tell your brother there are some great people here who have done it and understand what he is going thru. Dont know how i would have done it without the people online helping me. Still my mind will slip into darkness
and worry all the time and i run here for help. Wish i had a sister like you

bonifay
Posts: 3
Joined: Aug 2009

I had 35 radiation treatments and 3 chemo during the 7 weeks of radiation and for me the radiation was much worse. I had a tumor on the left tonsil that grew up on the lymphnode.radiation burnt me up, could not eat (thank god for the feeding tube). I did this alone getting myself to treatment. I was lucky in the fact I had a sister like you she came by every day to check on me. but the fight was up to me. I did what the doctors said was the best thing and they along with god helped me to beat this. good luck it won't be easy but it will be worth it.

AppraiserGirl
Posts: 20
Joined: Jul 2009

Thanks for all the positive comments from all of you who have responded. For now, my sister and I have dropped the chemo argument with my brother. His mind is made up that he's not doing it and he gets upset with us. I keep telling myself that it's his decision and all I can do is be there to help in any way he will let me. If he has to, maybe he can do the chemo later. Sis and I are keeping him stocked up on Biotene, Ensure and sugar free candy and gum so we feel like we're doing something.

The next month and a half is going to be hard because he will be deep into the radiation treatments and I hope he comes through the side effects ok.

Thanks again and I'm thinking of all of you. Keep fighting the good fight!

Oh, and Victor53 - you go guy!!!

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

You do have to respect his decision, though it be perhaps a risky one. If his Docs have done their best to impress on him the importance of an all out assault including chemo, and yet he has decided not to go that route, then, you have only to wish him well and be there in support as he goes through Rads.

I think there is sufficient evidence to indicate that Rads alone in many cases are effective. I have heard of cases where the treatment was surgery with/without rads and/or chemo and it appears that individual cases are so different yet yield a high percentage of reaching the 5 year survival goal.

Good luck to you and your brother. He is very lucky to have you and your family.

He will do well.

JK

AppraiserGirl
Posts: 20
Joined: Jul 2009

Thanks JK for the positive feedback. I am hopeful the radiation will do the trick. I don't know about surgery later, the radiation oncologist at the beginning said yes and later the oncology RN said no. Conflicting information! Something I will need to keep on top of as the weeks go by. Brother has completed 11 of 40 treatments. Should be 12 but machine was down one of the days.

Thanks again and I'm thinking of you and all those great people who are on this website providing their information and experiences. I don't have the words to say how much it helps to know there are people out there who have been through what your loved one is going through and that there is light and life at the end of the tunnel!

Thanks so much!!

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Everyone's case is of course very different. But, it could be that your conflicting info about possible surgery is related to what I was told, that once a patient has received the lifetime dose of radiation to the neck/throat area that future surgery, should it become necessary, is very difficult due to the compromised tissue and a drastically reduced ability to heal. That's what I was told. Fortunately my cancer has not come back and I hope it never does. But they (Chemo Oncol, Rad Oncol, ENT) told me that if it did reoccur in the neck area that additional Chemo would likely be the only option.

Best to Bro. He's a trooper and so very lucky to have your support.

He'll do well.

JK

AppraiserGirl
Posts: 20
Joined: Jul 2009

Thanks you guys. I'll keep you posted as things progress.

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

i had surgery after and i am doing great. I asked for it i wanted everything cleaned out and tested.
My case was very advanced so i couldnt do surgery first . I was misdiagnosed they thought i had tuberculosus lymphendentis
so 6 months later my lymphnode was the size of a lemon by the time they correctly diagnosed the cancer.
So it was to advanced for surgery so we did 2 months induction chemo then 2 months chemo and radiation , Then the surgery was an option i went for it because i wanted everything cleaned out and tested. After going thru the radiation i figured a little while longer feeling like crap wouldnt be bad . And it wasnt bad 3 or 4 days in the hospital and a couple weeks being gentle with it.

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Did they do anything special to promote healing taking into consideration the radiated tissue? Did you heal "normally"?

Just curious.

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

yes everything went normal no special treatment i think drains were removed on 3rd day and 4th i was checked out and home. And if i keep my chin pointed down a little you cant even notice, that half my neck was cut out. I think it was like 50 or 70 lymphnodes.
The plan was to put me under go in and take biopsies of the tonsil area where that tumor was then test them right there and then and if negative( which they were) then continue with the radical neck dissection. Then all the material taken out of my neck was tested and it all came back negative for any cancer. When they told me we got good news nothing active everything tested was negitive boy that was worth the operation hearing that. After 2 months of induction chemo and 2 months of radiation and chemo the operation was a piece of cake. I didnt have any real problems with the induction chemo or the first couple of weeks of radiation weeks 4 thru 7 of radiation and the month after sucked big time. It wasnt too bad thou i dosed my self pretty heavey with morphine er and the liquid oxycodone i attempted a self indusced suspended animation. It was about 2 months after radiation ended that i had the operation.

pmfennell's picture
pmfennell
Posts: 28
Joined: Jun 2009

Hello,

I am a 6+ year survivor of HNC and remain cancer free. It was at the base of my tongue with 3 lymph nodes involved. I decided not to have the radical neck dissection after much research. I did however have the Chemo, Rad, and surgery to remove the involved ,lymph nodes. I was never sick from the Chemo, I had some hair loss and had to stay out of direct sunlight for a while. The meds they have to combat the side effects of Chemo today are great. Yes, Chemo hits all the cells in your body, but you must throw everything you can at it to defeat this disease. It sounds like you and your sister have done your best to convince your brother to see a Med. Oncologist, but he has made his decision. Looking back on my situation I had more difficulty with the Radiation then I did with the Chemo. Take care and God bless you for all you have and are doing for your brother.

AppraiserGirl
Posts: 20
Joined: Jul 2009

Thanks PM for your kind thoughts and useful info. I've heard from others that chemo is less difficult than radiation.

I guess I need to read up on radical neck dissection. I thought it was removal of the affected lymph node or nodes. The surgery question is still up in the air and I don't know if brother will do it. It's a "cross that bridge when we come to it" kinda thing and of course we will have to respect brother's decision. If it were me, I would do everything I could to get rid of the cancer and hope it never returned, but that's me not him. My sister and I are there when he needs us and we will do whatever we can to help him.

Thanks again and I'm thinking of you and all the other courageous folks on this site who are either still going through treatment or are finished and are there for us to learn from.

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